caitlyn...just one month before we first heard the words "rett syndrome"Tomorrow is 1 year for us...I wish I could tell you that on the eve of this day, I'm ready to head in to the day head first and full of excitement. More likely is that I am ready to curl up in bed and skip the day all together...the day that our lives changed forever. I wish I could say that I have come to grips with everything that Rett Syndrome has brought into our lives. The fact is, it is a work in process. We will continue to go one day at a time to make it through everything. There has been hard times and there has been happy, easy times.
The words "Rett Syndrome" lifted a burden for us. It closed a chapter of the unknown. At the same time, it opened a new chapter in our lives. Another chapter of the unknown. A year ago while we sat in the office of our Neurologist and had the attending (our resident was much nicer about it all) basically tell us that Caitlyn would be mentally 2 1/2 forever, we lost a sense of hope. We grieved for the loss of dreams. Althought we still deal with some grief, as well as some anger...Today we have a new sense of hope. Caitlyn is learning to communicate with us in very clever ways...She enjoys doing what mommy and daddy tell her not to, and is even able to communicate her needs to use the potty!
A year ago as our hope was stripped from us, I spent many hours crying...Today, I still cry...I still struggle with the loss of hope..but at the same time, we have a new found sense of hope. We have learned so much about ourselves and Caitlyn in this past year. We have learned how differently everyone deals with the changes that life has given us. We are forever thankful to all of the support that we have recieved. We hope that everyone that comes on line, and reads about Caitlyn will be struck by her...Her smile is not something that you can see, and then just simply forget about.
One year down...and hopefully many, many, many more to go...Here's to learning about unconditional acceptance from a child!
